Home Sweet Home

We made it back safely from Pittsburgh after a long week of doctor's appointments at Children's Hosptal of Pittsburgh. Man are we glad to be back and hug our sweet Amelia! We are all much healthier than when I last posted. BJ's shingles are healing and he is able to handle the children more and Amelia has not had a fever since Wednesday. Praise God!

We arrived home at 2am this morning actually. This trip was somewhat unscheduled...I had my CT scan Thursday with 2 different types of intravenous dyes (one to show the veins and arteries of my liver and one to show its size) and was told I would not be able to nurse Thatcher for 48 hours afterward. We had not packed enough milk for this and only had about 20 ounces to get us home so we hit the road. (Thatcher does have some formula he can have that we add to his milk which is more easily absorbed by his body but it smells like dog food so we weren't not planning on him taking a whole bottle of this without some breast milk to wash it down). It was a little bitter sweet traveling home because so much will have happened by the next time I make that journey from Pennsylvania back to Tennessee.

We did not find out much that was completely new information about Thatcher's condition, which speaks for our care at Vandy, except that the Pittsburgh team felt it would be a matter of weeks, not months, before Thatcher's transplant. They do not feel there would be any benefit to waiting for Thatcher's transplant, meaning he would likely not gain enough weight or grow enough to make much of a difference for surgery before he becomes more sick. He had two sets of labs drawn, one Tuesday and one Thursday, that reveal his worsening condition and rapid deterioration of his liver. This was much sooner than we had anticipated and expect his transplant may occur sometime in March. This of course all assumes I am the living donor, which we have not heard for sure yet. We are still digesting this information, but like most things in this situation, it is out of our hands so we feel this is somewhat good news...let's get this show on the road!

We spent the weekend prior to leaving preparing to go, but with a sick toddler and husband my hands were tied so my mother, dad, and BJ's mom came over to help us watch the kids while we finished packing. This was a nice little going away party and helped lift our spirits I think.

We left a sick Amelia on the couch,which was very hard for me to do, but my mom cared for her while we were gone. We left about 7:30 as the rain came down. One diaper blow out and feeding later we traveled up through Louisville, Cincinnatti, Columbus, then finally Pittsburgh by about 7:30PM.

We checked into the Ronald McDonald house that evening, glad for arriving safely and to be out of the car but overwhelmed by the significance of entering this place for the first time. I cried as we stepped into our room. It felt like a dorm room, cold and with a funny smell. I'm so glad we can stay there, as it is so convenient to the hospital with an indoor walkway connected to Children's, but I still can't believe we are one of those people who need a facility like this.

Living Room

Thatcher liked it :)

Pittsburgh Children's Hospital (from the car)

BJ and I both attended Thatcher's evaluation on Tuesday. This included social work, behavioral health, lab work, and radiology that included a chest x-ray and ultrasound of his liver. Nothing too uncomfortable, but we were exhausted after wrestling a baby all day without a good nap. The second day started with a teaching session that went over transplant, potential risks and complications, and life after the surgery. This information can be quite depressing to consider what if it doesn't work, but again, this is in God's hands and we are hopeful it will be successful. A successful transplant requires simple monitoring and daily meds (only a couple a day about 6 months after transplant). We toured the transplant floor where we'll be spending most of our time recovering before being discharged. Once discharged, we'll return regularly for check ups until clinic releases us home.

Thursday was a bit more hectic. Poor BJ had Thatcher the entire day while I spent my time at the adult hospital a cab ride away. Funny, as I was chatting with the cabby who gave me a ride over that morning he commented, "I think I have problems until I meet someone like you." I simply told him that we used to be the same way :). I was interviewed and scanned to make sure I was emotionally and physically able to donate. Again, we do not yet know the results of my tests but as I told the psychologist, you give your children a piece of your heart, what's little liver (I read this from another living donor story out of Chicago).

We are glad to be home if only temporary. Family and friends are making this possible. In fact, we received an overwhelming response from our first post. Thanks for the encouraging words and prayers. It is more than touching. I know God is carrying us through this. I would like to add if there is anything that would help make this story more complete, please feel free to ask. Unfortunately, we know way more about this stuff than any normal person should know, that doesn't get paid $250k :)!

We are enjoying this SuperBowl weekend pretending to be somewhat normal. We will wait to hear if I can give some of my liver to Thatcher. Hope to hear first of next week. We'll keep you posted!